Thank you long-timers!

[Greatday2]

I just wanted to thank all of you long-timers that post on this board. You give the rest of us hope! Thank you for sharing!

[Figletf]

Amen

[NPmary]

How long have you had MBC?

[awesome4ever]

Thank you for posting as well. I will be entering my 6th year living with MBC this coming May. So now I consider myself long- term. When I was first diagnosed I didn't envision myself being here at this point. Hoping for many more and I really promote keeping a positive attitude while being realistic to how this will end. Take care.

[13plus in reply to awesome4ever]

Me too. I celebrated my 6 yr “ metaversary” New Year’s Day this year!

[NPmary]

That's great! I wish you so much more time.

[Nocillo]

I just passed 9 years, but don’t feel like a long term patient yet. There’s still so much I don’t know. So many are having longer and longer success stories. Hopefully we’ll all be long term! Bless us all!

[awesome4ever in reply to Nocillo]

I definitely consider you long term. Congratulations!

[Jhshl512]

I am coming up to my 11th year! So far it’s only in my bones. I am now on Truqap. I had two cycles completed when my liver enzymes went sky high and I came down with a serious rash. My oncologist took me off Truqap immediately. Liver is back to normal and the rash has cleared. We are talking about reducing the dose. We shall see. It’s a battle everyday. Stay strong and stay positive ❣️

Lori

[Yikes123 in reply to Jhshl512]

I am on Truqap too. I will be interested in what new dosage they will suggest. So far it is manageable for me. Good luck

[Jhshl512 in reply to Yikes123]

Thank you. I will let you know.

[Timtam56]

Hello Greatday2.

I’m Chris from Victioria in Australia. I found this board about 6 years ago. I too, was very thankful for it. I learned heaps and even though I had no belief that I would be here 6 years later, here I am. I’m on my 2nd line. 1st was Ibrance and Anastrozole. Now I’m on Piqray and Fulvestrant. Both with Xgeva Injections every 4 weeks.

I’ve had a tooth pulled with great fears of NOJ. (Necrosis of the Jaw) But I came through that with flying colours. I had a scare a few months ago with my change of treatment. I felt like it was the end, and I still think it was withdrawals from coming off my treatment while I waited to go to the next. But I am feeling better than ever now.

I have seen people come and go, daughters and husbands post for their loved ones who have either got MBC or have died and they’ve wanted to let us know. I’ve seen some people get stressed by others comments and leave the site. I’ve read posts of those of us who have constantly come here to support, or get support.

I have cried and carried my sadness into my days after reading that someone is in pain or has gone. I have found friends from all over the place, and I have learned so much.

There have been times I have not wanted to learn anymore about a certain treatment because I’m not there yet, or I think I may never need to know.

But always. ALWAYS……Someone has been here for me to talk to. And that is what this site is great for. At any time of the day or night. Anywhere I go. I can come here to check in at my own pace.

I think it’s such a great board with wonderful people who are willing to share and ask question which start up a whole lot of info for any of us to read, or not.

I hope you get as much from it as I have, and thankfully continue to have for now.

[Georgelila in reply to Timtam56]

Beautiful comment and made me cry. You just put it perfectly. Wishing you the very best

[Timtam56 in reply to Georgelila]

🙏🏻🙏🏻🙏🏻

[mudakurag in reply to Timtam56]

I,too am so thankful for this site.Thank you to all have helped me along the way!

[Lilywallytootsie]

February 10th was 7 years for me. Have been on Ibrance/Letrozole the entire time. Started at 125 mg. In the last two or three years it has been dropped to 100 mg. and then to 75 mg due to extreme fatigue. Decreasing the dosage hasn't helped with the fatigue, but I am not going to change drugs as long as it continues to work. I am 78 years old. Age may be contributing to the fatigue. Fortunately, I am blessed with a good husband and a house keeper every other Tuesday. Many friends, family and neighbors think that I have been cured since I am still alive. They don't seem to know stage 4 is not curable. My Mets are in my right lung and possibly a couple of small spots in my left lung that are too small to light up. Best wishes to all. Blessings, Hannah

[mudakurag in reply to Lilywallytootsie]

Hi HannahI've been on iBrance and litrazole for 5 and 1/2 years. At my last visit. My Onc suggested I might want to stop iBrance.

Has your onc ever suggested this?

I really haven't read about too many people ,if any ,who have stopped Ibrance because they haven't had any progression.

I have a pleural effusion the whole time,but my breathing hasn't been affected so I haven't had to drain it other than the first time they drained it to make the diagnosis. I've had a couple of scares where they thought I might have bone progression, but it didn't seem to progress so we're all assuming, I guess, that it didn't progress. So, I've stayed on the same drug protocol I was given when I started .

I'm very reluctant to stop iBrance. I keep thinking I'm going to visit the second opinion onc. I've gone to two or three times at Dana Farber. But I just keep putting it off.

Have you heard anything about stopping Ibrance?

Mary

[Lilywallytootsie in reply to mudakurag]

Hi Mary, No one has suggested stopping Ibrance since I started. I asked if I could lower the dose twice. And both times the oncologist thought it would be OK. Don't think I would feel good if doctor suggested stopping a drug that is working. I haven't heard of anyone stopping without progression or severe side effects. I went years without asking about reduced dosage, but I have had so much fatigue that I finally did. Dropping to 75mg. has helped with the fatigue. Dr. Hannah thinks it was a build up of Ibrance in my system. Ask your oncologist why he/she wants to change drugs without progression. Let him/her know that you have read that it is best to stay with what's working if possible. I wish you the best. Blessings, Hannah

[mudakurag in reply to Lilywallytootsie]

Thanks Hannah.When asked why she thought I might stop iBrance,

my Onc seemed to think that research findings may support stopping...!

I'm really confused.I see her in 2 days.Maybe I'll ask about reducing to 75 (I'm currently on 100) or lessening how much I take per month.

I have terrible fatigue but my onc has never suggested it's from iBrance. I'll keep you posted. Thanks again

PS I'm in my 70's.

Mary

[bubblystream]

what is considered a long timer? I am over 8 years. E+ p-hers 2 -

[Lilywallytootsie in reply to bubblystream]

Ibrance says 24.8 is the medium range so probably anything above that. Anyway, that is my guess. Blessings, Hannah

[friesianfan]

Hi there!

Chris/TimTam shared a beautiful summary that echoed my experiences with this group as well. My wife celebrated her seven year cancerversary last week on Pi Day. (3.14…sorry, it’s a big thing in the MIT community🤓. It was really big in 2015, haha!) She had no idea she would be here at this point, but seven years and eight chemo regimens later, this board has been so helpful to both of us! Thanks to all who have been a part of our journey and provided support and knowledge along the way…

Dave